My experience of dissociative identity disorder: crisis care

‘Are you Nadiene?’ It should have been an easy question to answer but right at that moment, I wasn’t Nadiene. I didn’t know who I was and I didn’t know where I was. But somehow, by asking that question, the policewoman, in her concerned voice and her heavy winter uniform, helped bring me back into the here–and–now. ‘Where am I?’

I had no idea where I was, except—rather obviously—that I was on a beach. It was raining and I was soaking wet. My legs were drenched up to the knees, indicating that perhaps I’d been in the sea. It was dark and late and freezing cold. I put my hands in my pockets and felt sea-shells. The policewoman told me where I was but it didn’t make any sense.

‘Where’s Chelmsford?’ I asked.

She laughed a little and replied: ‘You can’t walk there, love!’

I didn’t have anything with me—no money, not my phone, not even a coat. Apart from the sea-shells, the only thing I could find in my pockets was a one-way train ticket and my crisis cards. The last few hours were all a blank. I must have been feeling pretty desperate.

She took me to the police station: through the rain, in the dark, it was a surreal experience and I hadn’t quite landed back in my body yet. When we got there she phoned my CPN (Community Psychiatric Nurse), whose number was on my crisis card. Various other calls were made and eventually a friend came to pick me up.

As I have Dissociative Identity Disorder, I have often been ‘in crisis’. I have many little time blanks in my day where I don’t know where I’ve been or what I’ve done. I am frequently triggered and I have flashbacks and body memories of the things that happened to me as a child. Life is becoming much more manageable for me now but there are still lots of things that can throw me off balance and I’ve had times when ‘crisis’ has been normal. At those times, what do you do? What help is available when you’re so desperate that you’re willing to end your life? What constitutes a ‘crisis’ as far as the NHS are concerned and what help do they provide when it happens?

I have had a range of experiences with the NHS; some good, some bad and some downright appalling. But I don’t have much family and friends can’t always be there for you or they don’t know what to do to help. So turning to the ‘Crisis Team’ has often been the only option for me. Their response therefore really can mean the difference between life and death.

There was one time when a different part of me, an ‘alter’, was having severe flashbacks. I had huge dissociative barriers between me and this part, so I didn’t know what was happening for her and I didn’t understand what she was experiencing. But I keep a journal—a kind of diary that we use so that all the different parts of me can start to communicate with each other. And on this day, she had written that she was going to take an overdose and that she didn’t want to live any more. It was a Friday so I couldn’t speak to my therapist or anyone else in her team—everyone was off work for the weekend.

I felt very concerned about what this other part of me was feeling and what she was intending to do. Often different parts don’t realise that their actions have an effect on the whole person: we only have the one body, so an overdose will kill us all. Things like this had happened before so I wanted to do the right thing and I wanted to take it seriously. I didn’t know what else to do so I phoned the Crisis Team.

In my area, on an evening, the Crisis Team is manned by just one person. Sometimes I’ve spoken to psychologists; other times I’ve talked to support workers who have little or no knowledge of trauma or dissociation and are unqualified. But most of the time, like on this Friday night, there was no answer at all. I left a message, asking them to phone me back, and I did my best to wait. It’s hard, at that point, to cope with the silence: it’s hard to reach out for help, and even harder when the only response is a voicemail message. I didn’t know what to do with myself. Having to leave a message hadn’t lessened my distress—it had just increased it.

Two hours crawled by—it was so hard to wait. I tried to figure out what I was supposed to do. Eventually I remembered what my CPN always told me to do and I drove myself to A&E. This was where the Crisis Team was based so in theory it should make it easier to speak to them. Maybe my message had got lost. Maybe no one was going to phone back. I arrived at A&E and presented myself at the counter to give them my details. It’s a difficult thing to do when you’re distressed, to try to act normal when you can feel a dozen pairs of eyes looking at you as you try to talk as quietly as possible to the receptionist. I told her that I needed to see the Crisis Team. I was told to wait. So I waited some more.

Eventually the Crisis Team phoned me on my mobile. I nearly jumped out of my skin when it rang. I felt that a dozen sets of ears were now directed towards me. I felt increasingly out–of–control: the shame of my distress was now going to be audible to all these strangers. I spoke to the Crisis Team as discreetly as I could.

‘What’s the problem?’ the voice on the other end of the phone said.

‘I need help,’ I replied.

‘What’s the problem?’ came back at me.

‘I…I…I can’t really talk about it here.’ I was panicking, not knowing how to talk about something that I didn’t understand myself and not knowing if the voice on the other end of the phone would understand about dissociation or trauma or abuse or mental distress.

‘I…I…can’t really talk about it here because I’m in a public area,’ I stuttered. Silence. It was like an impasse. ‘Can I speak to someone I know?’

Silence again for a moment, then a weary voice back at me: ‘There’s no one else here and I don’t really see what the crisis is.’

Drowning in shame, I said very quietly, ‘Well I think I’m at risk and I think I need help.’

All the jumble of shame and lost-ness and abandonment and anger got tangled together in my head and I did what I was told. The person sat in the waiting area nursing their arm didn’t have to prove that they had a problem before someone was willing to see them. They didn’t have to strip off in public. Why should it be any different when your injury is a mental one and you need the opportunity to speak to someone in private? I went home, defeated, and took an overdose of my Nan’s tablets—about one and a half times what can be a lethal dose. I’d tried asking for help before I did it—before this distressed and traumatised other part of me did it—but there was no help to be had. I slept for 36 hours. When I went to the toilet I was so dizzy and disoriented I had to lean against the wall and drag myself along the furniture just to get there and then I was falling off it. I tried to get my thoughts together enough to figure out what to do. ‘I ought to go to A&E,’ I told myself but the answer shot back: ‘We tried that already.’

If the Crisis Team had been available to speak to when I first rang it would have helped and if I hadn’t been so wound up by waiting over two hours then I might have been able to think to take myself outside to have some privacy for the conversation. But that was the problem—I was in crisis, in distress, and not thinking. It certainly would have been better if I’d been able to see someone in person when I got to A&E rather than just being dealt with over the phone. These don’t seem to me to be unreasonable things to ask for but they would make a world of difference.

On the occasions when I have been able to see someone at A&E, my experiences have again been mixed. I’m quite well known to the Crisis Team, not least because of my frequent crises but also because I now work for the Trust in an awareness-raising capacity. Sometimes the attitudes of people doing the assessment leave a lot to be desired. If they know me, then the process is so much easier; if they only know my diagnosis, they can treat me a bit like a freak show. ‘How do I make you switch?’ one of them asked, as if I’m there for their entertainment and not because I am distressed to the point of self-harm or suicide. One lady who knows me quite well admitted that she finds it ‘scary’ when I switch. I’ve tried to explain to her, as has my psychologist, that it’s still ‘me’ when I’ve switched to another part and there’s nothing to be scared of, but she doesn’t seem to understand. It can feel very degrading to be thought of just as a psychiatric anomaly. I’m there to ask for help, not to be stared at and prodded.

In my area there is a kind of ‘triage’ system in place so that before you even get through to the Crisis Team, you have to speak to someone on the Trustline. Very few of the telephone operators on the Trustline are properly trained and even fewer seem to understand at all about dissociation. Some of the responses are simply ridiculous—they seem to have a list of suggestions on their screen and they just cycle through them in any order. I’ve often been told to just go and have a bath because ‘that will make it all better’. A friend of mine was told at 4.00 am to go out for a jog. So she went outside in her bare feet and pyjamas, still on the phone. ‘Right, I’m outside now but I’m a bit cold as I’ve just got my jimjams on. How far should I jog for, do you think?’ Reluctantly the call handler admitted that maybe it would be best if she just went back into her house.

I appreciate that it can be difficult for the operators to manage when we’re phoning in a dissociative crisis but I really think that it should be a part of their basic training. On one occasion I phoned the Crisis Team but, as usual, didn’t get through and so I left a message. By the time they called I had switched to an 11–year–old part of myself who was struggling with a full-blown flashback and was hiding under the bed. She was convinced that my Dad was coming up the stairs, so she was in a total state of panic. At the time, as me–as–adult–me, I didn’t know what was going on: I just knew that I was finding it difficult to breathe properly.

Then I found myself answering the phone and it was the Crisis Team again. The woman asked me if I remembered our conversation; I said, ‘No, not much.’ We ended up in a muddle, until I explained DID to her and then she began to understand what was going on.

But then she said, ‘So can I speak to Dirt then please?’

I was perplexed. ‘Who’s Dirt?’ I said.

She replied, ‘I’ve just been speaking to Dirt for half an hour.’

At that point I didn’t even know that there was a part of me called Dirt. But the woman from the Crisis Team then proceeded to tell me what Dirt had been telling her—lengthy, detailed disclosures about some of the abuse that I had blanked out from. She didn’t realise that it wasn’t a good idea just to go and tell me it all like that. I freaked out and the whole thing led to me being in crisis for several weeks with the most awful flashbacks and body memories. By just repeating what ‘Dirt’ had said to her, she demolished a protective dissociative wall and all of those memories came flooding in. For weeks I was self-harming because I just couldn’t cope: I had deep cuts all up my legs, on my tummy, even on my chest. So ironically, by phoning the Crisis Team, we ended up in a far worse crisis.

Even more senior staff such as psychiatrists don’t understand or know about dissociation. My first psychiatrist dismissed it as an ‘American fad’ and refused to discuss it, despite my psychologist being fully on board with the dissociative diagnosis. People have thought that I’m just sleepwalking because I was doing things that I don’t remember doing. One night I was found in a local park playing on the swings and slides, so they thought that I was asleep. Another doctor is still convinced that it’s just epilepsy and that I’m having a kind of seizure when I’m dissociative. Once labels get attached to you, it’s very difficult to shake them off. I’ve had a whole series of them—as well as sleepwalking and epilepsy, there’s been bipolar, schizophrenia, borderline personality disorder and its British equivalent, unstable personality disorder. All of them seem to miss the point that my ‘symptoms’—my behaviours, my distress and my dissociated personality—are because of trauma. All of these diagnoses suggest that my behaviour is illogical and weird, whereas it’s not at all if you take into account what has happened to me in life.

The professionals who grasp that—my psychologist with whom I have therapy; my CPN who also acts as my Care Coordinator; and my new psychiatrist—all have a totally different attitude towards me because of it. And some of the members of the Crisis Team have at times been brilliant too. Their response to a ‘crisis’ often leaves a lot to be desired but the care I’ve received when it’s been planned has been much better.

‘Crisis’ doesn’t just mean a sudden flare-up leading to self-harm and suicidality. ‘Crisis’ can be a long, slow burn too. At one point a few years ago, I was in such crisis that I hadn’t even been to the shops for a year. It’s hard to believe, now that I am working part-time and soon will be commuting to London as part of that. But a few years ago that was the level of crisis that I lived in as an ordinary part of my life. Over one particular period that went on for several months, the Crisis Team came out to see me most days and I got to know some of them really well and they were brilliant. The consistency of having the same small group of people coming out to see me made all the difference. At other times, I’ve had a stream of different people. The first time you meet someone you have to explain about DID and the trauma that led to it and it’s like throwing up your guts. At the end of it, they just say goodbye and go. You’re left alone with that disclosure still hanging shamefully in the air. And the next day it’s someone new. When that happens, it’s unbearable, and you clam up and refuse to engage with them just because you can’t bear to go through it all from the beginning again. So to have the same core team of people coming out to me every day made a world of difference.

One lady was really understanding and empathic about the paranoia I was experiencing during a particularly stressful period of my life. I became convinced that my neighbours were spying on me with cameras in the walls. But she didn’t try to ‘correct’ me; she just met me where I was at. She could see that I was really wound up and tense and she said, ‘What is it?’

I didn’t know how she might react but I said, ‘Well, the next door neighbours are looking at me through the wall—they’ve got cameras and they’re filming me.’

And she just nodded and said, ‘Okay, then, shall we go and sit outside in the car?’ So we decamped to her car, which felt a bit better but I was still too tense and jumpy. She said, ‘What is it? Is it because you’re in this street, so you think they can still see?’ And I nodded a yes. She just got it: she just shrugged her shoulders and smiled and said, ‘How about we drive somewhere else?’ And we did. We drove out of town and sat in the car in the middle of a field, where I felt safe. And I began to relax and calm down. It was such a relief. And because I was beginning to relax, I was able to have a normal conversation with her. After a while, I noticed that I didn’t feel paranoid any more and that was such a relief—for that insistent, banging worry to have stopped for a while. It gave me a glimpse that things could get better—just by sitting with this nice lady in a car in a field.

She came to visit me a lot and we would go out to different places. She would take me to a garden centre and we would have a chat and a drink and then she would do some mindfulness exercises with me as well. She would suggest a different kind of drink, like cinnamon and apple tea, and get me to notice the taste and the sensations in my mouth. Or we would look at the flowers and notice the colours. That was really helpful. It gave me a break from my struggle, got me out of my flat and out to some nice places and gave me a chance to breathe. And slowly I learned to be more mindful by myself, which helped to reduce my anxiety and to ground me. But most importantly, she treated me like a normal human being even when I was struggling and it gave me daily contact with another person where we didn’t have to talk about trauma but where we could talk about everyday things and get some confidence back.

Both this lady and other members of the Crisis Team helped me to overcome my agoraphobia and get out and about again. I wasn’t even able to do my food shopping on my own because I was so overwhelmed by the people, the busyness, the choice—the words on my shopping list would just become like ants crawling on the page. But bit by bit they coaxed me to give it a try and they went with me. Just a basket, just a few things at first, but it helped my confidence at the point at which I found life terrifying and overwhelming. So the Crisis Team can also be very effective and helpful and I’m grateful for the support they gave me during that time.

I knew, however, that I needed to be able to manage my times of crisis better by myself, as well. The middle of the night is always the worst time. Very few people have anyone they can reach out to when they’re in distress at 3.00 or 4.00 am. So one of the things that my psychologist helped me to begin to do was to gather around myself a kind of ‘survival kit’. First of all, I decorated the back of my wardrobe door with photos and posters. I had the PODS’ grounding poster and then lots of big photos of friends and people who care about me as well as a picture of my dog. When I was struggling, I would go and stand there and look at all the photos and the posters and remind myself that these people care about me and that my feelings will pass.

I’ve also got a big toybox where I keep various items that help to ground me and keep me safe—objects that mean something to me or are helpful to one of my parts. And I have a bracelet that I made myself and which I wear every day. I chose all the individual beads and I use it to ground myself. Wherever I am, even if I’m out with other people, I can take my bracelet off and remember that each bead represents someone who cares about me and wants me to stay alive. No one else knows what I’m doing by looking at it but the colours and textures all help me to stay in the here–and–now rather than drifting away into a dissociative state. A few years ago, when I wasn’t even able to go into a shop, I didn’t have any of these strategies and so when things got bad in the middle of the night then I had no alternative but to try to phone the Crisis Team or Samaritans.

Some of my experiences with the Samaritans have actually been really helpful, especially in the middle of the night. One man I spoke to did a wonderful visualisation with me about walking on a beach and by the end of it he got me to notice my breathing and I was amazed at how much calmer I was. It’s most helpful when the person on the other end of the phone can just be empathic and understanding but also when they help you to get your front brain back online so that you can think about what you’re doing, rather than just being in back-brain panic-and-survival mode. Many of the people on the phone don’t understand the neuroscience behind it but they do it instinctively. If a part of me is distressed and suicidal, like when I phoned the Crisis Team, it’s not helpful to encourage that part to talk about what they’re remembering or re-experiencing, but it is helpful to calm them down and then get back to adult me.

Yet a large part of recovery is about finding our own ways of managing our feelings so that we don’t end up in crisis. For a long time I was just angry at the way that the NHS was failing me and there are many times when they do still fail me and they could do things a whole lot better. I’m trying to do something about that in the role I now have in raising awareness in my local Trust. But I also had to get to the point of realising that I’m responsible for me and that I’m responsible for managing my distress and finding ways of coping with it. That’s where my ‘survival kit’ comes in and learning to ground myself through mindfulness too. The care we receive from the NHS is probably always going to be mixed and they really need more training and awareness about dissociation and how to help in a crisis. But we also need to train ourselves to do the best we can when we’re hit with overwhelming feelings and to have a range of strategies for managing those difficult times, usually in the middle of the night. Bit by bit I hope the NHS will improve their crisis care and bit by bit I’m trying to increase my own capacity to cope better too.